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bobuloops
@bobuloops

Posts: 1
Joined: Dec 11, 2014

After Hep C Treatment

Posted by @bobuloops, Dec 11, 2014

post harvoni treatment how did you feel before and how do you feel now

REPLY

@jerbobs

Same thing with me. Check out Forbes for tax exempt profit hospitals r making. I think as many as 4 million people r infected in US ALONE!
TAX EXEMPT PROFIT.
MAY THEY SMOKE A TURD IN PURGITORY!

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Not sure I am understanding your point.

@colleenyoung

Hi @klk370, we took your questions to a Mayo Clinic Specialty Pharmacist. Here is her response:

“Neuropsychiatric side effects of Hepatitis C treatment with interferon like fatigue, insomnia and pain can occur. Strategies for dealing with fatigue include taking frequent rest periods, napping when possible, and spreading tasks throughout the day based on energy levels. A gradual exercise program like a daily walk can help improve energy levels and improve the patient condition. It is important to maintain adequate hydration with caffeine-free drinks as dehydration can contribute to fatique. Medications that increase dopamine like ropinirole, pramiprexole or amantadine could be tried as there is some indication they may be of benefit in fibromyalgia and fatigue. More research is needed to determine optimal treatment.

Insomnia can contribute to fatigue. Sleep hygiene is the first step in treating insomnia. Sleep hygiene strategies can be found on the Mayo Clinic website (http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379). In patients with severe or refractory insomnia a sleep aid like melatonin or zolpidem can be used during implementation of sleep hygiene strategies train the body back into a natural sleep cycle.

The sedating antidepressant mirtazapine could be used for sleep, mood and pain although there is not as much evidence for use in treating pain. Low-dose Effexor or Pristiq can be used to treat both pain associated with ribavirin treatment and to improve mood. Pain, fatigue and insomnia can often be associated with depression.

Celiac disease could be considered in HCV patient who have been on interferon therapy who present with weight loss, diarrhea and malabsorption that causes nutritional deficiencies. It can present atypically with symptoms of IBS, fatigue, recurring abdominal pain, bloating or excessive gas. Celiac disease is managed by avoidance of gluten which improves symptoms over 2 to 6 weeks.

We found one article that mentioned a dementia-like condition following Peg-Interferon and ribavirin treatment for Hepatitis C although it seems more research is necessary to determine the incidence and optimal treatment for this.

I have searched for any open trials regarding “Post-Interferon Syndrome” or related and couldn’t find anything currently. Clinicaltrials.gov (http://bit.ly/2s7rLZL) is a good place to look for this type of thing.

@klk370 I hope this gives you some hope that there options for treatment and that although more research is needed to provide certain resolution of your symptoms you can feel some comfort that there are others who are working through the same issues. Mayo Clinic Specialty Pharmacists can help patients with Hepatitis and other serious conditions to create optimal drug regimens which maximize the benefit of their treatment while limiting side effects. More information about Mayo Clinic Specialty Pharmacy can be found here http://mayocl.in/2s7pT2S.

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Hi @nethshelley,

You might wish to view this article from Mayo Clinic, which details various drugs, including the hard-to-tolerate antivirals that you are concerned about:
– Coping with side effects of hepatitis C drugs: https://www.mayoclinic.org/hepatitis-c-drug-side-effects/art-20121674

I also found these published articles about the long-term side effects of Hep-C treatment;
http://www.mayoclinicproceedings.org/article/S0025-6196(11)64404-2/fulltext
http://www.cghjournal.org/article/S1542-3565(13)01055-0/pdf

Liked by afterthefact

@jerbobs

Same thing with me. Check out Forbes for tax exempt profit hospitals r making. I think as many as 4 million people r infected in US ALONE!
TAX EXEMPT PROFIT.
MAY THEY SMOKE A TURD IN PURGITORY!

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Do you think it’s morally right to profit from someone’s misery.

Liked by linda

@colleenyoung

Hi @klk370, we took your questions to a Mayo Clinic Specialty Pharmacist. Here is her response:

“Neuropsychiatric side effects of Hepatitis C treatment with interferon like fatigue, insomnia and pain can occur. Strategies for dealing with fatigue include taking frequent rest periods, napping when possible, and spreading tasks throughout the day based on energy levels. A gradual exercise program like a daily walk can help improve energy levels and improve the patient condition. It is important to maintain adequate hydration with caffeine-free drinks as dehydration can contribute to fatique. Medications that increase dopamine like ropinirole, pramiprexole or amantadine could be tried as there is some indication they may be of benefit in fibromyalgia and fatigue. More research is needed to determine optimal treatment.

Insomnia can contribute to fatigue. Sleep hygiene is the first step in treating insomnia. Sleep hygiene strategies can be found on the Mayo Clinic website (http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379). In patients with severe or refractory insomnia a sleep aid like melatonin or zolpidem can be used during implementation of sleep hygiene strategies train the body back into a natural sleep cycle.

The sedating antidepressant mirtazapine could be used for sleep, mood and pain although there is not as much evidence for use in treating pain. Low-dose Effexor or Pristiq can be used to treat both pain associated with ribavirin treatment and to improve mood. Pain, fatigue and insomnia can often be associated with depression.

Celiac disease could be considered in HCV patient who have been on interferon therapy who present with weight loss, diarrhea and malabsorption that causes nutritional deficiencies. It can present atypically with symptoms of IBS, fatigue, recurring abdominal pain, bloating or excessive gas. Celiac disease is managed by avoidance of gluten which improves symptoms over 2 to 6 weeks.

We found one article that mentioned a dementia-like condition following Peg-Interferon and ribavirin treatment for Hepatitis C although it seems more research is necessary to determine the incidence and optimal treatment for this.

I have searched for any open trials regarding “Post-Interferon Syndrome” or related and couldn’t find anything currently. Clinicaltrials.gov (http://bit.ly/2s7rLZL) is a good place to look for this type of thing.

@klk370 I hope this gives you some hope that there options for treatment and that although more research is needed to provide certain resolution of your symptoms you can feel some comfort that there are others who are working through the same issues. Mayo Clinic Specialty Pharmacists can help patients with Hepatitis and other serious conditions to create optimal drug regimens which maximize the benefit of their treatment while limiting side effects. More information about Mayo Clinic Specialty Pharmacy can be found here http://mayocl.in/2s7pT2S.

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Not understanding things,joint pain ,muscle aches,insomnia,fatigue,depression, anxiety,rage,Barretts esophagus, gerd,IBS,other gastrointestinal problems,enlarged lymph nodes, cognitive problems,edema ankles, peripheral neuropothy,

I was hoping to hear more about post treatment from others …..dose their blood work levels improve over time… like your platelet court HGB,MCHC, and your bilirubin levels improve

@colleenyoung

Hi @afterthetreatment.
I do not have Hep C. I’m the Community Director of Connect. When I moved your thread here, I was hoping that past members @airtruck54 @daveniles @bobuloops might return to share with you. I will continue to look for people who have Hep C and will join this discussion.

Hang in there!
Colleen
Connect Community Director

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You are not alone. I suffer from similar symptoms. Wish I could find a doctor that could help me.

Now that the word is out about how man of us have either lost a loved one or lost our quality of life and now suffer 24/7 after taking Harvoni, here is a law firm Fleming Law in Texas that is looking into drug induced injuries from Harvoni or Sovalid. Take a look. https://www.fleming-law.com/blog/2017/november/drug-induced-injuries-from-harvoni-sovaldi-and-v/

@smaug48

Does anyone have information about the Mayo Clinic treating people for Post Interferon Syndrome? I had 92 weeks of interferon for Hepatitis C (which didn’t work) 2008-2009 and now feel much worse than I did before starting treatment. Any information would be appreciated, thanks.

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I would also like to have information about any treatments to post interferon syndrome I'm having short term memory loss brain fog just wondering if there is any treatment or connections that anyone else knows of I went through interferon and ribavirin treatment twice 48 weeks each time second time my virus was eliminated and now I am experiencing these symptoms I have no dementia in my family at all

@smaug48

Does anyone have information about the Mayo Clinic treating people for Post Interferon Syndrome? I had 92 weeks of interferon for Hepatitis C (which didn’t work) 2008-2009 and now feel much worse than I did before starting treatment. Any information would be appreciated, thanks.

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Hi Jeffrey,
You might wish to view this article from Mayo Clinic, which details various drugs, including the hard-to-tolerate antivirals that you are concerned about:
– Coping with side effects of hepatitis C drugs: https://www.mayoclinic.org/hepatitis-c-drug-side-effects/art-20121674

You may also wish to join this discussion on Connect:
– Post Interferon Syndrome https://connect.mayoclinic.org/discussion/post-interferon-syndrome/

@jeffrey1207

I would also like to have information about any treatments to post interferon syndrome I'm having short term memory loss brain fog just wondering if there is any treatment or connections that anyone else knows of I went through interferon and ribavirin treatment twice 48 weeks each time second time my virus was eliminated and now I am experiencing these symptoms I have no dementia in my family at all

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I was recently diagnosed with fibromyalgia. I also completed 48 weeks of interferon and ribavirin

I felt nauseous before treatment and now a year and a half post treatment I still am nuaseous I was in a stage 3 fibrosis when I started treatment

Just recently had a test that showed I have acute, not chronic, hep c. That being said, why not start treatment sooner, rather than waiting to see if I clear the infection on my own?

@doc3rob

Just recently had a test that showed I have acute, not chronic, hep c. That being said, why not start treatment sooner, rather than waiting to see if I clear the infection on my own?

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Hello @doc3rob, I moved your discussion and combined it with the existing discussion titled, 'After hep c treatment.' I moved it to this new location so that your post would be seen by all of the Connect members currently discussing hep c. If you don't mind sharing more while we wait for the other members to share their experiences with you, could you tell us what your provider said about waiting to see if you clear it on your own? Is this something unique to acute rather than chronic?

@smaug48

Does anyone have information about the Mayo Clinic treating people for Post Interferon Syndrome? I had 92 weeks of interferon for Hepatitis C (which didn’t work) 2008-2009 and now feel much worse than I did before starting treatment. Any information would be appreciated, thanks.

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Hi there.
I had Hep C from contaminated blood transfusions from 1977 to 1988. It was not discovered till 2003. I had treatment with interferon and ribavirin from 2004 to 2006. I was very ill lost my hair became aggressive had great memory loss digestive problems confusion constant tiredness etc. After being cleared from Hep C i have never really felt well again. I tried to return to work but was forced to early retirement due to illness and mental and physical and no longer to work as an nhs nurse which ended my career. It dissolved my marriage and my home was reposesed. All these years of lost earnings and feeling so isolated are taking their toll. I have up trying to explain to GP after GP about my constant tiredness how some days its so hard to get up and do normal things how I'm always feeling like I have the flu then I get better for a while then it's back again. My memory is terrible I cannot retain new info. I get lost when travelling easily get the wrong bus or train etc and so on I still have a swollen abdomen have sweating episodes and insomnia aching joints tenderness around my liver area. My biopsy during treatment showed fibrosis and early portal Septa stage 2 and liver cell necrosis grade 3. I believe the treatment has left me with all these side effects.

@klk370

I have been experiencing permanent side effects after taking Pegasys interferon with ribavirin. I have severe fibromyalgia and chronic fatigue syndrome plus gastritis and esophogitis. I have vision problems. I finished treatment in 2009. I was told my side effects would wear off eventually but instead they are worse. I can no longer work or go to school. I function at less than 30% of normal. How many other people are suffering like me? I read that it is being called post interferon syndrome. What about lawsuits. My life is basically ruined, except I choose to go on the best i can. Klk370

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Hi . I fully understand your problems. Although I am grateful for being alive its still hard some days

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